Friends With FOP

After reading about the passing of Ricardo, another adult FOPer (Robin Rice) responded to the online group and eulogized Ricardo so beautifully.  He also shared the struggles Ricardo had faced in his life.  With his permission, here is a part of the email he shared to the group….

“Ricardo & I were good friends and we emailed each other often, the last email I got from him was on December 6, he told me he just found out he had Pneumonia and the DR said it was very bad, he was getting treatment at home, I never heard from him again after that email… 

Those who knew Ricardo, knew of his kind spirit and determination to get around all the barriers in his life one way or another, he will be surly missed by all who knew him, including myself. I’m sure this is very difficult for the FOP people of Argentina, and his good friend Moira, Mother of Manuel. Ricardo had been suffering a lot in his last few months of life, and is now in eternal rest and peace. Although he is now in a better place than we are, and no longer suffering, he will always be missed by all of us that knew him, he was a part of our FOP family, and we all feel it when one of our own passes beyond the veil. I will always cherish the friendship that I was so fortunate to have with Ricardo…” 

Robin also shared how Ricardo’s home life was not a supportive environment.  Apparently over time, Ricardo’s family resented that they had to take care of him.  Ricardo had shared with Robin that his family treated him poorly.  According to Ricardo, his family would leave spills and things on the floor for him to slip/trip over.  Recently one of his siblings purposely tripped him out of anger.  Reading Robin’s email sent daggers through my heart.   When I responded to Robin personally, he shared his story and I am absolutely dumbfounded.

I am still trying to formulate my thoughts and feelings into written words about this.   I’ve been working on this post for some time now and each time I review what I have typed, I feel like I am missing something.  I think what I need to share is Robin’s email to me. 

“I think that Ricardo and I were such good friends, is because we understood each other so well, we both came from families that didn’t care about us or care for us. Ricardo’s family did many horrible things to him to make him suffer even more, it’s very sad. I live alone, with very little help, I haven’t seen any of my family members in many, many years, in fact, I live in CA all alone, I don’t have a single relative anywhere in the whole state. They all live back east. My mother was killed in a car accident when I was 7 years old, my dad died in 2001, my half brothers and sisters all live further east, but we don’t talk or visit or communicate, it’s really sad, they are all aware that I will soon have to go in a nursing home, but they don’t care at all. Ricardo and I shared a lot of sad, emotional and personal stories, very painful stories about our lives. Ricardo really is in a MUCH better place now, I actually envy him, and I’d gladly join him in a New York second. I’m 38, and have advanced stages of FOP, I also have chronic and very severe pain 24/7, not even all the strong pain narcotics give me any relief, I also get very little sleep due to the pain and not being able to get comfortable, since my body is bent over, crooked and bent my different ways.“

My heart aches on so many different levels.  I am scared to think of what could happen to Erin if something happen to myself and Alan.  In my mind I have a tentative plan if it’s just me and Erin.  Regardless, I am prepared to care for Erin throughout her adulthood.  To not have family support…oh my God…  How crazy our family can be, I may need a time out to refresh myself but I would never abandon my family.  

Luckily Robin has Milo his service dog.  Thank goodness he has Milo and the FOP community.  Robin, thank you for allowing me to share your story.  I am keeping you in my thoughts!